Delayed Intensification

After a nice little treatment break Hugo has now started phase 4, delayed intensification.  Having had a break from drugs and hospitals, I have been feeling quite apprehensive about starting again.  We enjoyed having a little certainty in our lives and now we are into the unknown once more.  But, the sooner we get on with it, the sooner it will be over.  This is the last intensive phase before we get to maintenance which we are told is less arduous and will allow us to live a more normal life again.  At the moment maintenance feels like the light at the end of the tunnel, not the Big light that will come at the end of treatment, but a light all the same.

So we set off to our local hospital yesterday with slight trepidation, but also with a determination to get on with it.  Fortunately Hugo treats every trip to hospital with excitement and enthusiasm and it’s a testament to the staff at both our hospitals that he remembers the toys and fun rather than the treatment and procedures.

This is a 7 week phase and within that 7 weeks there are a lot of drugs.  Some of them he has had before, but there are new ones too.

The first, given yesterday at our local hospital, was a familiar one.  A dose of vincristine administered via wiggly.  We were also given a 7 day course of steroids, the first dose of which he took last night.  The side effects of both of these drugs made themselves known in less than 24 hours and poor Hugo was awake during the night with a sore tummy and painful legs.  He was also sick this morning which is not like him.  We’ve been warned that this is one of the most intensive phases and so far that seems to be the case.

We are currently as GOSH where Hugo has just had his eleventh, and final, lumber puncture procedure.  Thanks to the arm of the trial we are on he won’t have to have any under the maintenance phase.

This was the the last time I will need to carry him into theatre as he holds on to me, wary of what is ahead. I will no longer have to hold him as he cries waiting for the anaesthetic to take effect.  I won’t have to endure the wait, worried and frightened about the potential risks or things going wrong.  No more imagining surgeons and needles around my small, fragile child.  I won’t need to comfort him as he comes round, disorientated and scared with tears flowing down his cheeks as I battle to hold back my own.

They were able to use wiggly to give him the anaesthetic today, rather than the gas.  It was almost like he understood this was his last one as he handled it amazingly.  He barely cried when they administered the anaesthetic and when we got to the recovery area after the procedure he was already sitting watching Peppa Pig.  The fantastic nurses have got to know our little man over the months and learnt what works for him and today, for his last procedure, it all came together.  Such a relief.

At the moment he is being given a new drug called Doxorubicin, by IV through his wiggly.  Strangely it is a pinky red colour.  No stranger than the bright yellow methotrexate I suppose, but it just looks strange.  We have called it ‘strawberry juice’ chemo.  Hugo isn’t bothered in the slightest, I suspect these cute little names are more for my benefit, so I don’t have to think about the reality of what is actually dripping into my child.  He will have 3 doses of strawberry juice chemo, once a week, here at GOSH.

For the moment, Hugo is cheerful and enjoying trips to the playroom, his drip stand being wheeleed behind him by one of his ‘assistants’.  Me and his dad are shattered and looking forward to getting home and a nice takeaway.